Point of prostate cancer diagnosis experiences and needs of black men: the Florida CaPCaS study
Background Black men are disproportionately affected by prostate cancer and little is known about their experiences at the point of prostate cancer diagnosis (PPCD). Men who self-identify as black are commonly treated in a singular cohort even though they may be of diverse ethnic origin. This is especially important given the increasing number of foreign-born blacks in the United States.
Objective To examine the experiences and needs of ethnically diverse black men at the PPCD to develop an interpretative framework.
Method The research population was black men who had been diagnosed with prostate cancer during 2006-2010. We used a qualitative research design based on grounded theory principles. Using a semistructured interview guide, a trained interviewer collected data on the participants’ PPCD experiences. The data analyses included verifying the narrative data, coding data, and developing an interpretative framework.
Results From an initial sample of 212 black men, data were collected from 31 participants. The interpretative framework that emerged from the study describes the status of black men at the PPCD, experiences of black men at the PPCD, and emotional reactions of black men at the PPCD. Of note is the need among men at the PPCD for psycho-oncology support, emotional support, and time to reflect on the diagnosis.
Limitations Men with different experiences may have chosen not to respond to recruitment efforts or refused participation in the study.
Conclusion The framework provides information that physicians can use to help their patients cope at the PPCD.
Funding Department of Defense PCRP Award W81XWH1310473.
Accepted for publication December 5, 2016. Correspondence Folakemi Odedina, PhD; fodedina@cop.ufl.edu. Disclosures The authors report no disclosures or conflicts of interest.
JCSO 2017;15(1):10-19. ©2017 Frontline Medical Communications.
doi: https://doi.org/10.12788/jcso.0323.
As of 2016, Florida ranks second among all states in the United States in estimated new cases of prostate cancer and second in estimated deaths from prostate cancer.1 Disparities in diagnosis, mortality rates, and access to cancer care also continue to be a major problem in Florida, especially for black men. For example, black men were the only racial/ethnic group that did not meet the Healthy People (HP) 2010 objective to reduce the prostate cancer death rate to 28.2 per 100,000 men and that has not met the HP 2020 objective to reduce the prostate cancer death rate to 21.2 per 100,000 men (Table 1). Based on the 2013 prostate cancer mortality rates for Florida,2 the death rate for black men is almost twice the HP 2020 goal (37.49 per 100,000).
A diagnosis of prostate cancer is a life changing event for a man. In particular, there is limited research on the experiences and coping mechanisms of black men at diagnosis. This limited body of research indicates that black men’s reactions to their initial diagnoses varied, from being shocked when notified of their initial diagnosis of prostate cancer,3 to perceiving that they had received a “death sentence”.4 In regard to having to make decisions about their treatment options, some black men indicated that the information about treatment that they received from physicians decreased their anxiety,5 whereas others noted that they had not been given adequate information by a physician to make a decision.6 Patients have also reported that they felt as though they were not knowledgeable enough to ask questions concerning treatment options and preferred for the physician to make the treatment choice for them.6 Decisional regret is now a common observation among men who are not involved in making decisions about their treatment.3
According to the American Cancer Society, about 30,000 black men were diagnosed with prostate cancer in 2016.7 It is important to understand these men’s needs and help them cope effectively as they navigate the survivorship continuum. In line with our research program’s goal of ensuring quality cancer care for black men, the primary objective of this study was to explore the experiences and needs of black men at the point of prostate cancer diagnosis (PPCD). Specifically, we developed an interpretative framework for black men’s experiences at the PPCD, focusing on United States or native-born black men (NBBM) and Caribbean-born black men (CBBM). African-born black men were not included in this study because of the low sample size for that ethnicity. This study is part of a large-scale study that focuses on developing a model of prostate cancer care and survivorship (CaPCaS model) using grounded theory to study black, ethnically diverse prostate cancer survivors.
,Methods
The study aims to close the prostate health disparity gap for black men in Florida through community engaged research in partnership with survivors of prostate cancer and their advocates. The current study was a prospective, grounded theory study that involved one-on-one, in-depth interviews with 31 prostate cancer patients about their care and survivorship experiences. Specifically, 17 NBBM and 14 CBBM were enrolled in the project. Appropriate human subjects review and approval were obtained from the University of Florida, the Florida Department of Health, and the Department of Defense.
Research design
This is a qualitative research study. Based on the principles of community engaged research and using a rigorous qualitative research methodology, we recruited NBBM and CBBM with a personal history of prostate cancer. Guided by open-ended questions developed by the team, one-on-one in-depth interviews were conducted with each participant in their home or at a convenient location in the community. Our primary focus was on the participants’ care and survivorship experiences, with primary focus on their prostate cancer diagnosis. Qualitative research was our methodology of choice because little is known about the PPCD experiences of black men.8 With qualitative research, we were able to get our participants to “relive” their experiences in the presence of a culturally competent, well-trained interviewer and elicit the information about their care and survivorship experiences based on their interpretation. In addition, we were able to capture the dynamic processes associated with their experiences, documenting sequential patterns and change through both verbal and nonverbal communications, because the participants were interviewed twice.
Research population and recruitment
The study setting was Florida. The inclusion criteria were: black men, personal history of prostate cancer, ability to complete two separate interviews with each one expected to last 2-3 hours, and flexibility to meet interviewers at a convenient community site for the interviews. Participants were identified through the Florida Cancer Data System (FCDS)9 database. At the time of the study, the most recent FCDS database was for 2010. The FCDS has collected the number of new cancer cancers diagnosed in the state of Florida annually since 1981. It is a comprehensive incidence-only registry and does not extract data on patients with a death certificate. All investigators are bounded by the confidential pledge required for the use of the FCDS data.
